The curtain opened, I held my breath in anticipation. I heard Caroline before I saw her. As the curtain rolled away and revealed my little lady in her yellow tutu she let out an excited scream. Most of the audience laughed at her delight. Caroline was the only performer who wasn’t wearing ballet slippers and she had a teacher sitting on the chair next to her to ensure she would not walk off the stage.
Caroline was the only child with special needs attending her Montessori school. The director and her teacher were amazing but occasionally too overprotective. My husband and I had to advocate for Caroline to participate in the recital. When I started advocating for her participation, I had no idea how much it would mean to me. I did not know that 5 days before the performance Caroline would be formally diagnosed with autism.
I wasn’t expecting Caroline to be diagnosed with autism because I had been told for years that Caroline was “too social” to be autistic. Apparently, autism is a spectrum disorder and Caroline is on the social side.
I didn’t realize I was doing it but I held by breathe during most of the performance. Yes, Caroline needed a little help to participate but she was participating. And she was so proud to be participating – throughout the performance, Caroline let out excited screams and flapped her arms with excitement. But my little lady was standing alongside of her peers and was included.
A few days, after that performance our family moved from Chicago to San Antonio. To be honest, I delayed the ladies and I leaving by a couple of weeks so Caroline could participate in the recital. During the transition, I was trying to convince myself that the autism diagnosis was a good thing because it would qualify Caroline for more services.. Turns out, I could not have been more wrong. Autism did very little to secure Caroline services.
Caroline wandered in to the hearts of several wonderful therapists and a great teacher while we were in San Antonio. She began to participate in activities organized by Kinetic Kids – a special needs recreational group. Having a place where Caroline could be herself and I did not have to explain to other parents why Caroline did not want to stay with the group was refreshing, especially as Caroline was developing more behaviors. Caroline seemed to like the program but even when she was having tough days and did not want to fully participate there was no judgement. Kinetic Kids is a great organization that offers kids with special needs and their siblings a place and opportunity where they can socialize with their peers and have a moment to shine – whether during a gymnastics tournament or at the end of bike clinic when they have learned to ride a two wheel bike.
As luck would have it, our family only spent a year in San Antonio for professional reasons. We are now and have been in Cleveland east-siders for year. There are so many wonderful opportunities for kids with special needs, especially autism in this area. Within a five mile radius of our home their is not one but two highly regarded specialized schools for kids on the spectrum. Caroline attends Monarch where she receives daily speech therapy in a language rich environment, OT twice a week and the support of an amazing staff who wants nothing more than help Caroline reach her unique potential. All the kids in Caroline’s small class are on the spectrum and they are Caroline’s friends. Caroline may be nonverbal but with the help of her Novachat (communication device) and coaching from her teaching and therapists Caroline is learning to interact with friends and is building relationships.
On Saturday mornings both of my ladies take swim lessons at Goldfish Swim School. I was very hesitant about Caroline taking swim lessons with an instructor who did not have an aquatic or recreational therapy background. Given Caroline’s short attention span, love of water and risk taking attitude it was decided that Caroline would need to take private lessons for her safety and that of other students. The manager was very understanding of all my concerns, she offered us a trial lesson and was very thoughtful about the teacher she paired Caroline with. The teacher knew a bit of sign language and learned more to increase her ability to effectively communicate with Caroline. Caroline hears fine but when verbals commands are reinforced with signs her comprehension is a bit higher. The third week of swim lessons, I knew we had made the right choice to enroll Caroline in lessons at Goldfish. She woke up, found her bathing suit and kept signing to us that it was time to get to swimming. This is now a weekly occurrence and when Caroline walks in the door she screams with delight, everyone knows that Caroline has arrived and is excited. But what is maybe even more important than the joy Caroline gets from her swim lessons, the connection she has made with her teacher, and her feeling of belonging is that Caroline is actually learning how to swim. Her love of water and her elopement tendencies put her at great risk of drowning. Caroline can now swim a few feet unassisted, make it to the side of the pool and get out on her own.
During one of Caroline’s lessons, I was able to peel my eyes away from her and noticed the mom of one of Caroline’s friends from school sitting next to me. Her son has a bit more control of his body than Caroline and he is in a class with typically developing peers. Goldfish offers us the best of both worlds, Caroline is learning to swim, having opportunities to see and interact with typically developing peers and see her friend from school, every week. On special days when we go to open swim, the lifeguards always go the extra mile to make sure that I feel supported as a mom. They keep a closer eye on Vivian because they know Caroline requires my full attention. There was also the time they helped me save face with Vivian because I thought open swim went an hour longer and we arrived 10 minutes before it ended. The lifeguard so Vivian in tears and went the extra mile by not only asked Vivian if she could “help” him by removing all the rafts from the pool and then thanked her profusely for her. On the way out he gave Vivian a special balloon. And finally, the staff at Goldfish moved me to tears when I was informed that Caroline was named one of the students on the month because of great attitude and work ethic. Caroline is treated like a person and pushed to achieve goals – I love that so much about Goldfish.
Social recreational activities are important for all kids but especially for kids with special needs. In my opinion it is important to find programs that match your kids interest and ability level. That may mean participating in special recreational program or working with typical recreational programs to provide accommodation. All kids need an opportunity to be active, social and to interact with kids who are like them and those that are not. And if I am being really honest at the end of the day I want a chance to see both of my ladies shine and for their child to feel that sense of accomplishment.